Broken: Husband taken of transplant list

Posted by pattybrost @pattybrost, Apr 10, 2019

At Mayo.. today am told husband will be taken off of transplant list. He was on it. but inactive for last year and a half but now will be taken off. They do not believe he will survive a surgery because of his heart but also do not believe he has much time left either………

Hello @pattybrost I am so very sorry to read of your sad news today. That is tough stuff for sure! My best friend went through being taken off the transplant list and it was a very tough message to receive, process, and adjust to.

I am Scott and I hope, since you are at Mayo right now, you can access some of the help they offer there. I know the social services folks were very helpful to my wife when she got her diagnosis of brain cancer. They helped her and the rest of the family, too.

When my wife was prescribed hospice care the doctors told me it would likely be 6 weeks or less and she fought on for over 14 months.

If you don't mind me asking, how long had your husband been on the transplant list and for what?

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So sorry to hear your sad news. Wishing you strength in the months ahead.

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Oh my dear. I’m so devastated for you. 😥 I’m not a counselor or someone you know but please know if I were there I’d have my arms around you in a big hug and allow you to lean on me. I know we all want every second we have with our loved ones. Forever. But we can’t have that unfortunately. I’ll share with you a couple of things though. These are just my own life experiences, mind you and we are all different. First is never give up. By that I mean make sure to enjoy every day you have together. I had a friend who had an incurable cancer and was told at several reputable cancer clinics the truth. She decided to search and be treated with alternative therapies. It’s what that person wants that’s important. It’s their decision, as hard as it is. I was one of several friends who rotated and stayed in Mexico with her at a “clinic”. I’ll just say I’m still so angry with the charlatans promising recovery and taking hundreds of thousands of dollars from desperate people. Needless to say she’s gone now. Myself and her family wished she had taken that time to be with them doing things she always wanted to in her life that she was capable of at that time. I don’t know where y’all are in that mindset but whatever it is I hope it’s best for both. From another direction and without going into long drawn out story, that it is, I’ll just say that I’ve cared for a very severely mentally and physically handicapped son for 39 years come September. I was diagnosed with a brain tumor and had it removed 20 years ago come November. No cancer but caused me extreme health problems since then. Now, I’m dealing with the more than likely possibility that down the road I’ll be diagnosed with Alzheimer’s. I have many days that I am so upset, feel so down, my life is over and have nothing left. I’ve explained to others, and it’s the truth, that when I realize I’m feeling that way I make myself stop and look around. I always, I mean always, see that I’m really fortunate. It’s not easy to see over our own problems because they are so large to us. When I do that I always see there are so many others so much far worse than I can imagine. It’s pretty humbling. I still have my son. Others have lost theirs. I may not know how much longer but they have been telling me since the day he was born he wasn’t going to live much longer. I can do nothing but what I have been about my health and live every day the best I can. Even though many of the days are excruciating I know there is a better one ahead. I have a very good friend who I can share my thoughts and feelings with who is supportive and let’s me cry or scream with anger when I need to. I’ve had a long time to finally come to grips with this in one way or another. Your own road is beginning. Everyone deals with grief, what you have, differently. Just make sure not to shut everyone out. I’ve seen that in grief we can shut out even the person we are grieving about losing. Make sure you have someone you can talk to. Make sure your loved one has someone, especially if he’s someone who can speak his feelings more openly with someone else because of not wanting to hurt you. Don’t keep anything bottled up. It will only hurt more. Believe it or not you need to take time for yourself. Oh that’s a hard one for me still. Caregiver burnout is real. You can’t help others if your not well mentally and physically. You can only fake it so long before you are short and angry with everyone because of exhaustion or any of the other reasons. If there are family and friends supporting that’s terrific but there are times it needs to be just you and him. Try to live as “normal” as you can, whatever it is for you as long as possible.
There. I’ve written a dissertation that I really didn’t mean to do. I just kept thinking of things and suggestions for you to try. I wish I could help but another fact I can’t change is, it’s a road the person must walk themselves. No one can do it for you or know exactly how you feel. We can only support. Bless you and my best to you both. If I’ve offended in any way it was not by any means intentional. I’m a person who looks at things realistically and try to help. Truly.

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@debrat1 such a wonderful reply! It really made me think. I admire how you’ve been “through the wringer” but are able to help others. You’re a special person!

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@becsbuddy

@debrat1 such a wonderful reply! It really made me think. I admire how you’ve been “through the wringer” but are able to help others. You’re a special person!

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Thank you. No mam, I’m not special at all. I’ve just lived through things that I’d not even wish on an enemy. We think we can’t do….whatever it is that sounds so daunting to us. The thing is, you can do/live through more than you think. You don’t chose it, you don’t want to but you “can” find the strength, courage and determination that it’s not going to beat you. And love. You can, against all odds and obstacles, overcome the walls you put up in your mind not being to do “whatever it is” when you love. Sounds corny but it’s true. I know. But that was very kind of you to say so

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